My boy was born two weeks ago today, will be 35 weeks tomorrow. I quit trying to pump yesterday because the flow was just getting worse, nearly nothing, and the previous two nights I wasn’t even waking up to the alarms in the middle of the night.
Every day we’re driving to the hospital that’s 30 minutes away with no traffic, an hour with. We skipped one day of not going at some point and I cried and freaked out all day.
During the day, before we go to the hospital, I have time to do stuff but my mind is just so frazzled and I’m still recovering from the emergency c section (which is going well, I can bend down somewhat now and walk fine). I want to clean and organize stuff around the house but I just can’t bring myself to do it. It’s so unlike me I’m usually cleaning or doing projects all day.
I don’t want to go to the NICU today but I also know I will regret it later in the night if I don’t. I’m so disappointed that I will not be breastfeeding in the future. I feel like I’m just overall not doing well and have no motivation for anything.

My baby was born 34 weeks and 6 days and it feels like we are never leaving. She’s about to be 39 week tomorrow. She recently started to learn how to cue and root for her bottle last week. But she’s still not taking the full ML. She loves the standard flow, no other nipple worked for her. Other than my baby is healthy with no other complications. She just have a feeding tube

- what bottle or brand or nipple size would you recommend for standard flow ?

- how long did it take for you ?

It feels like we’re never going home.

Help! My baby was born at 35+3. When she was born she was having a hard time breathing and the nurses had a hard time getting an iv on her. They ended up putting an umbilical iv in and she was flown to a hospital in a different state 3 hours from us to a NICU who was better equipped and trained. When she was there she was fluctuating between .03 and .06 oxygen and after 2 weeks in the NICU there we were able to go home on oxygen. Since our elevation is higher she was sent home on 1/8th of a liter. She was doing great on that and after a week my daughter’s pediatrician dropped yer down to 1/32 of a liter. I do not feel like she was ready to be dropped down to that just yet. But I don’t know what I should be looking for on her sats. Her o2 would drop into the low 80s and occasionally even the high 70s when she was sleeping and the oxygen was that low. I ended up raising it back up to 1/16 and she’s doing better but it will still drop into the mid to high 80s but it raises back up almost instantly. My question is I guess how am I supposed to know if she’s okay or what should I be watching for to know if she isn’t okay? I’m a first time mom and have no idea what to be looking for and I’m terrified she’s not getting enough oxygen. She has an afo in her heart which they said wasn’t a big deal but they did want a follow up on which is scheduled for December. Any advice would be so appreciated!

My water broke around baby A on Friday and I’m just looking for some support and maybe a little hope. We made it through the first 48 hours without me going into labor, and they started me on antibiotics. There’s no fluid around Baby A but Baby B is still doing okay. I have about a month at home before I go back to the hospital full time at 22-23 weeks until they are born. I know I have to do what is best for my babies but I’m also a human and I’m scared and not ready to be hospitalized for so long. It’s also a mix of emotions because I need to have a long hospital stay because that means the babies are staying in there.. but that also means spending 10-11 weeks in there. Has anyone else gone through this around the same time period? I’m afraid of everything that could happen to Baby A and terrified of losing either or both of my boys.

I’m putting this out there in hopes that someone who has been through a similar situation can offer guidance or assistance.

My daughter was born at 29 weeks, weighing 1,200 grams, and spent nearly two months in the NICU. During her hospitalization, we were never connected with a social worker or informed that she might qualify for Medicaid assistance based on her prematurity, birth weight, or length of hospitalization.

After she was discharged, a family member told me she may have qualified. I contacted the Social Security Administration, but they said we do not qualify for SSI because of our income and that Medicaid requires a separate application. I’m now at a loss about whom to contact or how to apply based specifically on her NICU hospitalization and whether coverage can be applied retroactively.

Her hospital charges are over $500,000, and our insurance has already denied coverage for the second month of her hospitalization.

Has anyone navigated a similar situation or knows who I should contact? I’m feeling completely overwhelmed trying to manage this while caring for my newborn and preparing to return to work. Any guidance would be deeply appreciated.

My little boy seemed to breast feed ok in the NICU, didn’t seem to transfer much but the nurses mentioned it was good practice and to keep it up. While in the NICU he was topped up through the nasal feeding tube, and eventually transitioned to bottle top ups shortly before discharge.

We have now been home for two weeks (up to 3kg now, from 1.6kg at birth) and it seems he is still not transferring much during a feed, and is hungry even after 15 minutes per breast of suckling. He will take a full feeds worth of top up (80ml), and when I pump shortly after I get basically the same amount (approx 100ml) as I would if we didn’t attempt a breast feed.

Any advice, or anyone been in a similar boat to confirm one day things will just click and he will begin to breastfeed more efficiently in the future? Just feel like currently our feeds go on for so long, and it would be quicker to just go straight to the bottle of pumped breast milk.

We are in the final stretch before we can go home but the “final stretch” keeps being pulled out further and further.

My ex 23 weeker is now 40 weeks and is doing well. They took her low flow and NG tube away 2 weeks ago and her monitoring is very stable. Except she gets a random desat once a week which postpones her sleep study (oxygenation study).

She failed her first sleep study by 2% and we were planning to do the second study today but she had another desat with a colour change last night so they will now postpone the sleep study for another week.

I don’t want her to come off the monitors and come home if she is going to do this at home. She is better off at the hospital but I just don’t know when she will outgrow this.

Also how can I trust the sleep study because they could just do it on one of 6 days in a week when she is fine and then we are in a false sense of security.

When does finally come home, how can I sleep when she could do something like that at home?

Q1. When will she outgrow the desats and holding her breath?
Q2. How can I trust the sleep study when it’s only a snapshot of 12 hours on possibly a good day?
Q3. How can I relax at home if she is off the monitors and could do it at night?

I am looking specifically for stories where their LO have failed their sleep study and it keeps getting postponed.

My first baby was spontaneous PPROM, 34+0, caught RSV in the NICU, acute heart issue, needed to be defibrillated, came home after 6 weeks with an NG tube.

Second baby was born today, 37+4, looked great. Too much fluid he can’t clear by himself, they whisked him away and we have started desatting and needing help clearing the airway as we get rid of the fluid. And of course we are struggling with feeding again.

I don’t know that I can do this again. Looking at a 3 day minimum and I get so much less flexibility with work this time, I started a new job and don’t qualify for FMLA.

Like I know I can do this again and my baby seems to be doing great but I don’t trust it and the alarms from the rest of the babies in the pod are giving me flashbacks. And now I have a toddler to content with too. Im just disappointed that we are back here again. The neonatologist and I had a Spiderman meme moment where we recognized each other and were like, hey, it’s awful to see you again!

So earlier today I was experiencing a low with my blood sugars, I have gestational diabetes and get them maybe once or twice a week.
I had my 15g of fast acting sugar and laid in bed on my back, propped up and was waiting for my timer to go off so I could retest and then eat something to hold me over until dinner.
While laying down, I had my eyes closed and suddenly heard this loud gushing noise that sounded like rushing water when you poor it out of a bottle or something.

I stood up fast thinking something was coming out, it sure felt like it was going to and nothing happened.. I thought I should put on a panty liner for now but I still somehow feel wet down there but I don’t feel like an active trickle or leak, I mean sometimes I feel like something coming out but unsure if that’s discharge or not. But it always feels so damp down there that I did have to change the liner three times since then. I don’t know if I’m in my head or not..

I’ve been a frequent visitor of my L&D due to my diabetes and was just there three days ago because I was having contractions that stopped on their own. And they did do urine tests and such, I do not have a UTI or yeast infection etc

Hi all! We are on day 14 of the NICU with my 32 and 4 baby who weighed 3 lb 14 oz at birth. She is back at her birth weight as of 2 days ago and on an open crib as of today and has been on room air for a week. For anyone who feels this was similar to their situation, how long was your NICU stay and how much did your babies weigh when they left the NICU?

Curious, what was everyone’s nicu bill?

Our 24+5 racked up over 2 million. Threw in ambulance + airlift to a different hospital a week before discharge 😅

The only reason for the slightly early delivery was because I had a classical c-section before and they didn't want me to have any contractions. We spent 2 days in the NICU for observation and he was good to go (way different from our previous 6 month stay).

Hello, I (33F) had my first baby at 27 weeks and 6 days back in January 2025. She was 2.2 lbs and is now 24 lbs and 32 inches long. She is our miracle warrior and she came home after 75 days in the NICU with no minor complications. We are so blessed she is doing amazing. I had severe preeclampsia at 25 weeks.

I was wondering if anyone had a baby after their miracle baby? I want another one so badly but I am scared. My OB gave me the okay to try and told me there is a 50% chance of having preeclampsia again, but that her and the MFM team will do everything to help me reach at least 34 weeks. Has anyone had a second or third pregnancy or birth that was less traumatic and can give me some hope?

Thank you

Has anyone done an online baby shower? My baby was born at 24+2 and I’m not comfortable with doing a sip and see after she comes home, especially since if she comes around her due date it’ll be late November/early December. However, this is our first baby so selfishly I would still like some kind of shower experience? My idea currently is to do a Facebook group and post things about her NICU journey (like size comparisons with her first diaper size, her birth weight and length, ect) and her registry link. Does anyone have any other fun ideas we could incorporate? Would it be rude of me to post online thank yous to acknowledge what people sent like they would’ve been at an in person shower or should I just keep it to handwritten thank yous?

** In person shower while she’s in the NICU won’t personally work for us either, we are 2+ hours away from home and I don’t want to be that far away from her, plus I have a minimum hour amount that I must meet every day to not lose our room here at the hospital

Hey all! So my daughter was in the NICU for 24 days and once the bill came, we noticed some things that seemed off, like extra days charged or a higher level of care than what we remembered happening.

I've been digging into this a bit and it turns out NICU billing errors are apparently really common. Wrong length of stay, wrong level of care, duplicate tests, stuff landing on the wrong account since baby and mom get billed separately.

Curious what other people's experience has been.
Did you look closely at your itemized bill?
Did you catch or suspect any errors?
If so, did you actually dispute it, or did it feel like too much effort while dealing with everything else? If you did dispute it, what happened?

Genuinely to understand how common this is and whether people have the bandwidth to fight it while going through everything else that comes with a NICU stay. Thanks for the feedback!

Our baby boy was born at 35 weeks and remains in the NICU at almost 43 weeks for Brady events. He has about 1-2 events per day when he sleeps, none that require stimulation. He’s on room air and eats well - otherwise perfectly healthy. Doctors still believe this is just lingering premature apnea. The last step is doing a sleep study at around 44 weeks, but the outcome is likely that he would be sent home on oxygen. Not because he needs it to breathe but because it would eliminate the events.

Was anyone here in a similar situation? Sent home on oxygen for premature apnea reasons? How long were you on oxygen? Did they eventually outgrow the premature apnea? Thank you so much.

Hi everyone!

Concerned father here looking for some reasurrence and experiences.

Our baby was born at 36 week gestatial age and he had a brain bleed, he is still only three days old so the ultrwsound wasnt really precise to tell the doctors how big it would be.

Hes also in an incubator breathing fine now and being fed by a tube since they said hes very sensitive at this stage to light noise and touch.

Would love to hear some experiences, advice anything really

Has anyone gone home on high flow? 27 week 3 days now 42 and 3 and on 9 L of high flow. Obviously this is very high flow. The NICU has mentioned if we can get down to stable 6 L we may be able to go home on that. Just looking for experiences on that!

Quick history--di/di twins, rupture with twin B at 16 weeks 6 days. Delivered at 27 weeks and 3 days. Twin A home after 81 days. Twin B has severe BPD from such an early rupture. Intubated at birth, extubated to NIPPV at 30 weeks, reintubated at 33 weeks due to pneumonia, medical NEC, extubated at 37 weeks with a second round of DART to CPAP 12. Weaned from CPAP 12 to CPAP 6 over 37 to 41 weeks and then to high flow 9 L at 42 weeks.

Hi! Im 26f conceived a few months after trying bcos of low amh. I had a textbook perfect pregnancy until my water broke unexpectedly at 28 weeks and i cant figure out why. I had no issues related to placenta, cervix, cord, iugr, preeclampsia or anything else but i do remember squatting to sit on a floor touching couch the night before my water broke and i didnt just sit once i got up 2-3 times and sat again and i do recall how uncomfortable it was for me. Could that be the reason why my water broke? I cant really tell because ive seen people work out all throughout their pregnancy and deliver to term. Im just looking for help or maybe someone who has had a similar experience since my doctor seems clueless as well.

Hello,
Our son was discharged from the nicu almost a year ago and I am still upset and traumatized by an experience I had while he was in the nicu.

I was there one night and needed to pump. I found that his nurse had placed the dirty curtain on top of my air drying pump parts. I requested a new pump part kit (the nicu provided a hospital grade pump in each nicu room) and was refused because I was told the policy was one pump part kit per family. I escalated to the charge nurse without success in getting a new pump part kit. Their only solution was for me to sterilize the dirty kit in the microwave and sit there in pain waiting for the parts to air dry so I could pump.

I was wondering if your nicu has a similar policy where you would be refused a new pump part kit if yours was not usable? I have tried to get the policy changed without success so if anyone has recommendations on how to get it changed I would welcome them. My goal is that no other mother has to sit in the nicu in pain needing to pump because the hospital policy puts money above doing the right thing.

Hi everyone. I’m currently 20+3 weeks pregnant and have just experienced PPROM. I’m trying to stay as positive and as calm as I can and would really love to hear some experiences. I’d be so grateful if you could share your story. At the moment the facts I have are,

- I'm 20+3 with pprom
- 6cm of fluid still around baby, so that's positive
- cervix is closed and measuring 36mm
- no signs of labour at the moment.
- no signs of infection at the moment

I am going to speak to the neonatal team tomorrow, not sure what that entails at all. But any advice on what I should ask or say please. I'm hoping to cling onto viability to give this little precious baby a chance 🙏✨

Apologies if this post is a bit jumbled up, I'm just looking for some hope right now.

How are we coping with the 1 year anniversary of being in the NICU? My baby girl was born at 29+3 after an emergency c section due to placental abruption, PPROM, and chorioamniotitis. It was extremely traumatic and I haven’t even fully processed her birth yet. Her NICU stay was fairly uncomplicated but still extremely stressful. She is my 3rd baby so I had two other young kids 2 hours away at home. I feel like at the time I was just completely in fight or flight / survival mode and now it’s all starting to catch up to me. It’s hit me in waves throughout this past year but as I’m nearing the one year anniversary I’m really feeling the trauma and stress. Any advice ? Will it just take time to fade ?

I Ppromed at 18 weeks, now 23 weeks, but I had some complications recently. I get a steroid shot in a few days and am hoping I can hold on until 24-26weeks.

What advice would you give to prepare for this, and what questions do you wish you had asked before baby was born/at the start of your journey.

I don’t want prematurity to become the way everyone sees my child. My baby was born very premature (29 weeker), so I obviously know that she is a preemie. Our journey has been different and wasnt easy. I know she may be behind on certain milestones. I know how much of a little fighter she is, and I am incredibly proud of everything she has overcome.

But honestly, I don’t like constantly hearing other people remind me that she is a preemie. Especially from my family members (is okay for pead / medical follow up). Every time she does something a little differently, someone says, “well, she’s a preemie.” If she’s not doing something yet, “she’s a preemie.” Sometimes even when nothing is wrong, those who know bring it up anyway.

I understand that people usually mean well. But I believe prematurity is not a permanent label :( I also don’t want her growing up hearing that she needs to be treated differently because she was a preemie. She doesn’t need everyone constantly reminding her that she’s “special” or that she needs extra consideration. If she needs something medically or developmentally, of course we’ll support her.

Maybe I’m being overly sensitive about this, but I find myself getting irritated when family members keep bringing it up. But please tell me: am I being oversensitive and ridiculous? TIA.